Cautious Hope

They worked! Those blessed T cells bloody worked!! Mostly...

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So it’s with some cautious optimism that we are letting you, our cherished support network know that Ned’s bone marrow disease has dropped from 58% to 0.01% in the 12 days since his T cell infusion - astonishing even the doctors. That 0.01% is not ideal, but it is much, MUCH better than anyone’s wildest dreams for the T cell outcome. Best of all, the much more hardy, tenacious CNS disease (the leukaemia in his spinal fluid) – the part of the disease that would strangle any likelihood of remission and 2nd transplant – has completely cleared! That the T cells have somehow been able to target and kill the majority of his ‘foreign’-looking leukaemia is unprecedented, and we are SO grateful to God for this glimmer of hope at the eleventh hour… though it be still tentative.

Last week, Ned was admitted to hospital with his body’s post-T cell inflammatory response, and the unknowns were horrendously overwhelming. And during the sleepless haze of that awful week, whilst he was in significant pain from the T cells attacking his leukaemia, I was all too aware that it could be a steep descent to a tremendously sad, heartbreaking end. We were thankful to have Seth’s Dad visiting, and now, my parents have flown over (after leaving Congo) to help. Ned was fortunately discharged on Saturday, Seth’s birthday, but it’s been an anxious wait to know if we’d be returning immediately to Tasmania for Ned’s final numbered days, or if we could timidly allow ourselves some hope. 

I can’t begin to explain how the undulating waves of hope, with more crashes than crests, have worn us thin and sunk us into a pessimistic quagmire, which is why our caution precedes us. But as it stands right now, Ned’s disease is radically diminished thanks to those precious T cells, and we’re hopeful that next week’s bone marrow results will continue in this positive trend and show full remission. If this eventuates, we’ll be returning to Melbourne in mid-July and start preparing him for another bone marrow transplant. NEVER would we have thought that this would become the better option. We sit in a puzzled state of apprehension, yet constantly anchored by God’s steadfastness and its transcending peace – torn between grief of putting Ned through a 2nd transplant, and now, the joy that we don’t yet have to face the dire alternative. And we humbly thank God for carrying us through such a dark time, and continuing to walk beside us as we face what lies ahead. 

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  “Peace I leave with you; my peace I give you... Do not let your hearts be troubled and do not be afraid.” 

God knows

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It is with great pain and sorrow that I write this update. Over the last 6 days, Seth and I have been confronted with the turmoil of having to make an excruciatingly distressing decision. Not only did symptoms and a comprehensive scan early last week divulge that Ned’s cancer has progressed exponentially (now with increasing bone marrow disease, non-responsive central nervous system disease, and solid organ infiltrates, causing some bony erosion); but shockingly, his bone marrow test revealed that his leukaemic cells have mutated and are no longer expressing the right target for the incoming new T cells (with many finer details in between). A catastrophic blow. Our last option, with now only minimal chance of curing his rapidly-advancing cancer.

Knowing the requirement to stay grounded at Seattle Children’s Hospital for at least 2 weeks post-infusion because of its significant side effects, accepting the T cells brings the great risk that Ned will never return to his beloved Tasmanian home and friends, who he so desperately misses. On the other hand, declining these T cells (along with their tiny chance of bringing remission) means we leave Seattle now so that we can get Ned home for his remaining few weeks-months. We will struggle to forgive ourselves for the unwanted outcome either way - wanting the best for Ned, but all too aware that this 6yo can’t comprehend the severity of his disease, nor the implications of either decision. Choosing “the lesser of 2 evils” has never been such an apt description, and at such a pivotal moment desperately needing mental clarity, we have never been so exhausted and deplete.

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6 days of crying out to God for mercy and guidance.

6 days of tearful, resigned deliberations with the members of his medical team.

6 days of watching Ned compliantly accepting his abnormal routine of endless medications, daily hospital appointments, procedures, constant nausea and pain; the atrocious physical toll; weighing up his quality of life at the moment.

6 days of sleepless moaning shrouded by the private hood of nighttime.

6 days of wretched helplessness, watching our children playfully interact as though nothing is wrong; watching Ned striking the fine balance between normal energetic, imaginative, playful, and terminally ill.

6 days of trying to distract our minds from the colossal ramifications of either decision we make.  

6 days of wrestling with the sudden stark, blunt reality of mortality, and the vast hole it will leave in our family. 

6 days of grappling with finding the right words to gently explain this nightmare to our children.

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6 days of trying to soak in every moment, every touch, kiss and hug, and entrench them deep into our souls’ memories.

6 days of knowing the end is nigh; the intricacies of which are only known by God.

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Short of a miracle, there is nothing more we can do for our darling Ned, and my heart aches and aches and groans and pleads for another lifeline. Just a little bit more hope.

After much anguish and turmoil, Seth and I have decided to leave everything in God’s hands; so this morning, Ned is having his T cells re-infused. We don’t have unrealistic expectations of a medical miracle, and acknowledge that there’s every chance they will do nothing, and Ned’s disease will progress so quickly in the next few weeks that he won’t make it home. But we came here for the cells, so given he’s clinically stable, we’ve decided he will get the cells, come what may.

Though there is so much unknown right now, this we do know: God is sovereign over Ned’s cancer. The battle is His, and we are helpless in this. This horrid situation doesn’t disprove His existence and love, and though we waver, doubt and rail against Him oh so often, our souls feel more stillness and peace knowing how treasured Ned is to our Father. And He knows intimately the pain of watching a child suffer. God knows.

“Though I walk through the valley of the shadow of death, I will fear no evil; for You are with me...” 

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Sleepless in Springtime Seattle

… An apt description of our first 2 weeks here…

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Seattle is a spectacular city – this time of year only serves to highlight its luscious greenery, with an abundance of blossom dappling the sunlight onto footpaths, and painting the perpetually-azure sky like a canvas. We’ve been fortunate to now be settled into a short-term rental house, furnished by a very generous community, within walking distance of Seattle Children’s Hospital. However the turmoil of moving away from home yet again has been deeply unsettling for all of us; our nights being endlessly broken by each of our children and our own wrestle with undulant fears and uncertainties. Foreign differences we once would have easily assimilated, such as cultural variations, unfamiliar healthcare system, hospital operations and measuring units, amplify any feelings of pre-existing vulnerability and despondence – especially when already emotionally and physically deplete, with 4 jet-lagged kids in tow.

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We left our Tasmanian home at 3am on the 6th May, and after traveling 26 hours, we arrived in Seattle at 11.30am on the 6th May! On the 14-hour leg to L.A., the kids’ naps didn’t overlap, one’s stomach was affected by turbulence, one shamelessly threw outrageous tantrums and played chasing games down the sleeping aisles; then a pilot fainted and fell down stairs sustaining a nasty head injury, and seemingly, there were no other doctors on board. At that flight’s end, as I handed over to the ground medical team, some disembarking passengers offered sympathetic looks to our embarrassed selves, but our mortification continued, as our darling 3yo screamed her way through the entire airport. Hey hey, Seattle, Eleanor Isham has arrived!

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Our first few days were spent attending initial appointments at Seattle Children’s Hospital (finally putting faces to the names from many email conversations), celebrating Mothers’ Day over a delicious picnic in gardens with some new friends, and exploring the local area for essentials, as we searched for longer-term accommodation. Amazingly, after we signed the lease on a vacant house, Juli, the friend of one of our Tasmanian church members broadcast our need for household items via social media, and by the end of the week, our short-term rental was generously furnished – giving a local TV channel a triumphant news story.

The sheer delight on the kids’ faces upon discovering their beautifully-made beds and gifted toys gave us some blessed moments of joy, after so many days of running household tensions and anxious over-reactions, and Juli and her husband, Chris, have continued helping us settle in.

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Finding a home here, with a small garden, more than 2 bedrooms, and play areas for the kids, meeting some neighbours, Lucy making a friend, and the lease of family bikes to get ourselves around was all timed perfectly. Following our move into the house came a week of bad news. The evaluation tests done in the first few days revealed Ned’s bone marrow leukaemia had increased from <0.01% to 43% within only 1.5 months, and spread to his CNS (spinal fluid) for the first time, which immediately alters long-term prognosis. This shocked our Seattle, Melbourne and Hobart teams, and plans were hastily amended to include some intense chemotherapy as soon as possible after his T cells had been extracted. This ‘apheresis’ process was carried out last week, after surgery for placement of a new Hickman central line, and he’s now re-started intense chemotherapy to try and hold his disease till the T cells are ready for re-infusion. 

 

The second devastating blow, delivered a few days later, was that due to Ned’s unique T cell biology and disease load, he will require a 2nd bone marrow transplant. The CAR T treatment that he’s having here (tailored to his specific T cell markers, and so new that Ned will be the 7th in the world to be treated) is still imperative to remove his current chemotherapy-resistant cancer’s aggressive build-up; however CAR T independently will not be enough to achieve long-term remission, and will instead now act to maximise his chances of a 2nd transplant being his “cure” (as per the limited long-term data we currently have for this treatment). Ned will go into transplant (this time from an unrelated donor) upon our return to Australia – meaning we won’t get to go home to Tasmania in August. And whilst we knew this might be a possibility after our Seattle time (based on his in-depth cancer evaluations and response to CAR T), having to begin everything all over again in Melbourne is a monumental disappointment that we are yet to convey to the kids for fear of our own crumbling emotions.

  Momentous day: apheresis (T cell extraction)

Momentous day: apheresis (T cell extraction)

Celebrating Ned’s 6th birthday on the weekend was bittersweet. By cooking pancakes for breakfast, taking a family train trip into the city, sharing fish & chips at the waterfront, riding the ferry to Bainbridge Island for ice cream, watching fishmongers throw fish at the markets, and having a candle-lit Spiderman birthday cake, we ticked many of the boxes on Ned’s wish-list, to his delight.

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Although the bitter undertones were unavoidable for us, and though there’s plaguing guilt about each of our children being short-changed, we’re trying to remind ourselves to cherish the preciousness of each child, to simply be, thanking God for the 6 years we have had of this delightful, chatty, affectionate little lad, who just loves telling long-winded stories at the table instead of eating his dinner. 

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A Frantic Pause

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So this is where we’re at… embarking on an even steeper uphill trek in this epic cancer battle but this time, even further from home, with no one there yet known to us. We’re ever so grateful and deeply thankful that we have the opportunity to keep battling for Ned’s life, but sad that it’s come to this – uprooting the kids yet again, and putting Ned through more intensive treatment.

These 3 weeks back home in Tasmania were supposed to be a pause in the madness, and whilst the long-awaited reunions with dear people were sweet, and the return to our home amongst bush and wildlife was so soul warming, the weeks have unfortunately been awash with tension-filled, tumultuous days and cataclysmic moments.

After ending our Melbourne time with an unexpected 6-day admission for a very sick Ned (who’d also sustained a fractured shoulder), followed by a night in ED for Gilbert, and another round of gastro courtesy of our 3yo’s stellar hygiene, we then had multiple problems changing flights, then boat trips, then changing them all again. It was an exhausting time, whilst we were also dealing with the 4 unsettled kids’ emotions, and packing up our flat of 10 months. Discovering that the critical key for Ned’s continuous infusion pump was missing upon our return directly to the Royal Hobart Hospital ended our long day of travel with yet more cortisol-fuelled hours, but coming home to a clean, well-stocked house, courtesy of dear friends, was just so lovely.

Seth and I often comment how it makes our hearts sing seeing our children spending hours exploring and playing in our bushy backyard, and relishing the space after our 2-bedroom flat on the 2nd floor for the last 10 months.

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Our frenzied weeks here have been filled with box unpacking from our house move 3 weeks prior to our sudden interstate relocation last year, Melbourne bag unpacking, and the enormous task of planning for this international venture - passports, visa applications, work-related and household admin before leaving for several months, combined with the regular hospital visits. Disappointingly, Ned’s central line got infected, he became septic and crashed very rapidly during one routine clinic visit last week, and he needed a 6-day admission – starting the night before I had to fly to the US Consulate in Melbourne (with Gilbert) for a few hours in order to attend the necessary face-to-face interview for visas. Despite eventually clearing that infection, there were questions about the integrity of his central line altogether, culminating in another new infection in his central line at the start of this week. After several discussions with Melbourne and Seattle, the decision was made to remove this compromised central line in fairly urgent surgery Wednesday morning – 3 days before our flights.

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We’ve so appreciated having this reprieve of a few weeks back in our true home with our dear community – despite the hurdles and stress. It’s been a salve for our bruised souls. And now, as the 2 older kids have enjoyed a couple of days at their old school, farewelled their friends and continue filling their lungs with fresh Tasmanian air, Seth and I are hastily packing suitcases for the imminent, arduous 26 hours of travel to Seattle for 3-4 months, where Ned will undergo fairly intensive treatment on a clinical trial at Seattle Children’s Hospital, starting on Tuesday 8th May. We leave from Hobart at 6am on Sunday morning, and once again, humbly ask that you spare a thought or prayer as we begin this journey and settle in the US. This is a much more advanced treatment with more risks, and though there is good long-term data thus far, it involves ongoing treatment, and there are significant, long-term ramifications for Ned’s health. If we’re honest, we are both so fearful for what the future holds, but we’ve learned again and again that no matter how deep we fall, God will carry us.

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“So do not fear, for I am with you; do not be dismayed, for I am your God.   I will strengthen you and help you; I will uphold you…” Isaiah 41:10

Easter Miracle, with a few bumps...

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Finally, a glow has been cast over our sobering past 10 months in Melbourne; and though we’re still on this road, with its harsh, rugged terrain, for a grim reason, the bumps have smoothed out a little, thanks to all of YOU...

What a memorable Easter weekend - one replete with incredulity and gratitude, as Seth and I came to realise just how much our various communities love and support us and our dear boy; no coincidence that it occurred at Easter, I’m sure. Your generous financial donations, kind words and prayers, particularly over the last week, have now enabled us to secure Ned's CAR T treatment in Seattle, and we'd like to humbly acknowledge each of YOU and the part you have played in him having another chance at beating cancer. We are beholden to each of you for whatever you’ve done - for any prayer you said, dollar you contributed, letter you wrote, social media post you shared... 

We agreed to be a part of the RCH’s Good Friday Appeal last year, giving consent to a journalist and photographer following us for several months. Now, as we’ve just experienced the week that was - starting off with a poor bone marrow result (telling us Ned needed to get to Seattle as soon as possible, at exorbitant cost); and then ending with RCH’s Good Friday Appeal consequent media exposure, we see God’s hand in all of it - though we have at times berated His seeming absence. It is the combination of your selfless giving and the generous financial gift from an overseas donor, now confirmed, that will get Ned to Seattle for his treatment. There have been some misunderstandings along the way, and in the vein of maintaining full transparency, I do just want to clarify that the media exposure we’ve had has neither been sought out nor anticipated, and the large overseas donation is for medical costs only - the funds we raised here will certainly also be needed. Anything superfluous to our requirements will not be used for our own personal gain, especially given the dire lack of funding for cancer research, which is so close to our hearts. Our dear friends, Stelle and Glenn Carmichael, who set up the crowdfunding campaign and have stood by us every step of the way, will continue to help guide us and hold us accountable to this. 

Now, as we pack up the 10 months of our Melbourne hospital life, and return the various borrowed items we've accrued, Ned has restarted some chemotherapy and the immunotherapy continuous infusion (in a backpack) to steady his disease progress until Seattle. We've had to begin the chorus of sad goodbyes to dear family, friends, and Lucy's school here in Melbourne; particularly difficult since these have been our network through such a dark, harrowing period. And between now and Seattle, we were permitted a few weeks in our Tasmanian home to "recharge", especially now the immediate stress of such an epic financial burden has been lifted... This was to begin on Sunday this week, however, in true Isham family style, I write this now from a hospital room, after a sleepless night, thanks to Ned’s freshly fractured shoulder (from an incident yesterday morning), a new infection, and a significant reaction to the immunotherapy drug overnight requiring hospital admission, forcing us to now postpone the booked returns till next week (hopefully). 

For now, though, THANK YOU. So very much. Despite the grim reason this funding is needed, what an extraordinary demonstration of generosity and love, and so aptly timed for a weekend when we were celebrating the greatest gift of all, from the most sacrificial act of all.  

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When the transplant fails...

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As I write this, it horrifies me that Ned's disease is rapidly proliferating, though he still looks so well. It has been for a while now, and this was confirmed by his bone marrow result delivered with tears on Tuesday evening. We partially expected it, knowing already that his bone marrow transplant from Eleanor had failed, but having any small amount of hopefulness entirely extinguished is oh so bleak and heartbreaking. 

Thus now, after much careful thought and prayer, Seth and I can confirm the much-unwanted direction of our next steps in Ned's treatment: we have to relocate to the Seattle Children's Hospital in the United States promptly (early May) for Ned to be treated on their CAR T-cell clinical trial over the course of 3 months. These CAR T trials use various methods to remove a patient's T cells, genetically engineer them so they are programmed to attack leukaemia-affected B cells, and re-infuse them into the patient. This is now the best remaining option for a patient like Ned, whose specific cancer seems to be resistant to chemotherapy, because at this stage, the risks of a 2nd bone marrow transplant (this time from an unrelated donor) would outweigh the potential benefits. This particular Seattle trial has been running for several years, putting 80% of patients like Ned into remission, evidenced by their data. This treatment wouldn't necessarily preclude a 2nd bone marrow transplant in future, however given Ned's current disease progression, his treatment history, genetic makeup and type of leukaemia, this is what our RCH medical team is strongly recommending we pursue given there's no viable similar trial here in Australia that is currently entirely open and suitable for Ned (although there are several pending). 

It does unfortunately come at enormous, prohibitive cost, and for this, we must humbly ask for some support along the way because we are ever so grateful for how much our village have uplifted us and carried us to this point. We know we are Ned's parents, and he is our responsibility, and we will continue to do our utmost to save Ned's life and raise all our children with love. But though we are exploring every possible avenue for us to finance the upfront cost of Ned's treatment as much as possible, we've sadly found ourselves in the desolate position of falling short and needing to plead for help because we just simply cannot do this alone.

www.gofundme.com/get-Ned-to-Seattle

We’ve now very kindly had an offer from Rare Cancers Australia to host a tax-deductible crowdfunding site (but if amount ever exceeds our needs on this site, we won’t be able to reimburse any; rather, we will donate it to cancer research at the Royal Children’s Hospital, Melbourne).

http://treat.rarecancers.org.au/campaign/2059/helping-ned-isham

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Fragile

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It’s the familiarity with which she purposefully strides, mundanely pushing the packed pram through the hospital.

It’s the first-name greetings they both dispense habitually to passing hospital staff in the corridors and baristas in onsite cafes.

It’s the small girl leading the way through the building’s twists and turns with a boldness that exceeds her years.  

It’s the limp with which the slightly taller boy hobbles in a futile attempt to keep up with his little sister, to his despair.

It’s the efficiency with which the adults seem to manage several unruly children whilst negotiating queues and healthcare staff carrying out their jobs.

It’s the short temper and quick irritation they occasionally display when even the little things go wrong.

It’s the deeper skin grooves, the wisps of grey hairs, the sunken, encircled eyes, and the haggard shoulder slump that they both carry wearily.

It’s the over-enthusiastic jokes and games he’s playing with his laughing kids, to cover his fragility.

It’s the unmitigated anxious overreaction she responds with to any casual conversation, joke or perceived threat.

It’s the moments of hesitation in response to usual catch-up questions, followed by answers tinged with defeat and pessimism.

It’s the casualness with which she discusses the surgery or procedure scheduled the next day.

It’s the ringing phone that remains unanswered and the delayed replies because they both struggle to respond to the dreaded questions, or converse with an unbroken voice.

It’s the hardened smiles and slightly pressured speech when talking to other parents, while awaiting the doctor’s call to convey the dreaded test result or distractedly looking at the phone in anticipation. 

It’s glimpsing her, stooped over with face in hands in a hidden corner.

It’s the deadpan, emotionless tone of her voice when discussing the few remaining options and their consequences for her little boy.

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It’s now been nearly 4 years of battling this beast, and it’s viciously unrelenting – the constant difficult decisions, battles, broken promises, whilst away from home – both physically and emotionally burdensome. And now we still don’t see an end. The transplant was meant to be it – the end; the cure, but that end-of-tunnel light is now only a vague glow. Every stage has been and is still a rocky, contentious, grueling phase filled with uncertainties and no guarantees. We are sad for all of our children, particularly Ned, and so very shattered – waking each morning, after yet another broken, unsettled night, to get on with the essential motions of getting 4 children ready for the day ahead. It’s a cruel irony that the child who you’ve spent the most one-on-one time with, caring for during their most vulnerable moments; the one in whom you’ve seen the most deep resilience and raw emotion, is the one whose existence you have to constantly grapple with the possible loss of.

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We still don’t know what’s ahead, and neither do the doctors. But this we do know: though we are breaking inside at the prospect of our final tentative option possibly falling through, though the grief we may experience is too hard to even contemplate, we know that wherever Ned is or goes, he will be held in loving arms here on earth or with our Father in heaven. 

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Unwelcome Choices

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Waiting. In the oncology world, it is never just empty, stagnant time like it is in so many other facets of life. But rather, a mind-numbingly vacuous, black hole filled with apprehension, dread and tension, muffling every other noise of life. Though we're overly familiar with both, the emotional toll of this ever-present oncology reality far exceeds the physical demands… waiting for the next appointment, waiting for the next test, waiting for the next results which have the potential to devastate your child's and your family’s life.

This dreaded unwanted result is where Seth and I found ourselves last week – the bone marrow test positive for residual leukaemia, that we had so been hoping and praying against. It has taken even Ned’s treating team by surprise because it has happened after a gold-standard sibling transplant, with some Graft-vs-Host Disease (GvHD has an anti-leukaemic effect). The ensuing week has been a tortuous road of complex decisions that no parent should ever have to make; all options fraught with potential dangers and an immunological complexity that I can’t do justice to or accurately convey; all of it shrouding several family celebrations - birthdays, anniversary and the start of Lucy's 4th grade school year. 

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This time last week, we were hurriedly seeking ethics approval and agonisingly consenting for Eleanor to go be readmitted, put back under GA again, and have a tube inserted into her groin to collect more lymphocytes, over the course of many hours, to infuse into Ned… with only a 10-30% success rate. Knowing Ned’s life was hanging in the balance, questions were asked of us requiring emotionless objectivity regarding our children, just as a family gastro outbreak took its physical toll, and we spent hours in weary, sleepless anguish, despairing that God has allowed this.

Today, we’ve just emerged from a teleconference with leading oncologists and cancer researchers in Seattle regarding possible treatment there as the next step, at prohibitive expense, as well as their opinions on alternative developing treatments depending on Ned’s disease course from here (based on his T cell markers, his genetic makeup, his level of immunosuppression and GvHD, and his results thus far). It seems rather dispassionate and cold-blooded to be constantly weighing up various incompatible treatments (one precluding eligibility for the other, etc), balancing risks, and even waiting till disease worsens enough to qualify for further treatments; but we are so thankful to God that there even is another possible option. And after today, Ned’s specialist, Seth and I all feel slightly more reassured about our plotted treatment plan and time course, with Ned’s best interests in mind, based on these experts’ advice. Though one option would be at exorbitant cost, and there are still many uncertainties (which prevents me from giving further details), this I do know for certain: we are currently witnessing an enormous upsurge in cancer treatment technologies developing internationally, not just in Seattle… meaning that in a matter of months, there will be clinical trials emerging and treatments available for select paediatric cancers that would most certainly have been palliated only a couple of years ago.

Ned will have a repeat bone marrow test on the 27th Feb, the results of which we will get the following week. This will be the determining factor on how we proceed, whether locally or overseas. If we have a similar result to what we just had last week, we’re hoping that returning to chemotherapy in a holding pattern may buy us some time before the ideal treatment is approved in Australia, God-willing. And this gives us a slim hope that we can continue to imagine our family continuing on with all 4 precious children. 

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So after we crumble for a few days, whilst trying to maintain a sense of stability for the other children, we pick ourselves back up and recalibrate to the new "normal", with yet another adjusted frame of reference and altered perspective. And the interminable waiting, while in isolation, begins yet again...